How Can I Have a Conversation About End of Life with Someone Who Has Dementia?

The most effective way to have a conversation about the end of life with someone who has dementia is to initiate the discussion shortly after they have been diagnosed. The symptoms of dementia can accelerate quickly and unexpectedly, leaving a loved one unable to readily express themselves and understand what is being communicated. For this reason, it’s important to discuss end-of-life decisions and arrangements as soon as possible so they can communicate their preferences and concerns.

When considering these conversations, it can be helpful to identify which topics are most pressing. If someone already has a dementia diagnosis, the legal and medical documents that require their direct input become the immediate priority. For conversations focused on end-of-life medical treatment and legal decision-making, the essential topics include:

• The importance of an advance directive to outline their wishes for medical care.
• Their interest and preferences in life-extending interventions or life-sustaining treatments.
• Creating a will, trust, or power of attorney to ensure their financial and legal affairs are managed according to their wishes.

Focusing first on the medical and legal documents ensures their voice is central in these critical decisions while they are still able to participate fully. Other important conversations about post-death preferences that can be addressed include:

• Funeral arrangements and preferences
• Whether they want to be an organ or tissue donor

People with dementia can become easily confused, so explain potential end-of-life options with simplified language and take your time with these explanations. People who have dementia can also become overwhelmed when too much information or too many questions are presented to them during an interaction, so it is crucial to keep discussions brief. You may need to have multiple conversations about end-of-life decisions in order to gather the information you need or to fully understand what your loved one’s preferences are. It can be helpful to ask questions such as: 

• Do you want all available treatments to be used? 
• Are there treatments that you don’t want to receive?
• Do you want to donate your organs or tissues? 
• What are your religious/spiritual/cultural beliefs about dying? 
• How do you want your beliefs to be respected and honored?
• Do you want to die at home?
• Do you want to be buried or cremated? 
• Do you have a will/trust/power of attorney? Do you want to create one? 
• How do you want to be remembered? 
• What type of memorial do you want? 

Every individual’s experience with dementia is unique and their responses or ability to respond can vary. Their cognitive abilities can fluctuate daily or within a matter of hours, so it’s important to be patient and determine which times of day they tend to be more capable of communication, such as in the morning instead of the evening. You may have to repeat your questions or statements in order to facilitate an ongoing conversation. Additionally, some individuals with dementia realize that they can’t communicate or explain themselves as effectively as they’d like to and this can be frustrating, so remember to be as supportive and encouraging as possible. 

Sources

“How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease”. The Conversation Project. https://theconversationproject.org/tcp-blog/how-to-talk-about-end-of-life-care-when-a-loved-one-has-alzheimers-disease/ 

“End-of-Life Planning”. Alzheimer’s Association. https://www.alz.org/help-support/i-have-alz/plan-for-your-future/end_of_life_planning 

“Talking about death and dying to someone with dementia”. Hospice UK. https://www.hospiceuk.org/information-and-support/your-guide-to-hospice-end-of-life-care/talking-about-death-and-dying-someone-dementia#:~:text=The%20Alzheimer%27s%20Society%20advises%20that,be%20appropriate%20to%20tell%20them.